Next steps for mum in hospital

[WhatEverNextNow999]

This is Scotland, different care rules may apply.

My mum has stage 4 lung cancer, is too weak/frail for chemo, so treatment of symptoms only.

Mum has been in hospital for the last two weeks following a fall at home. While in there she has developed a chest infection, is on oxygen and antibiotics for the last week, and when I visited this evening was sweating and asleep and dreaming/delerious a little.

She hasn't been out of bed since going in, has refused physio to get her out of bed, is now refusing food, and has been quite confused. UTI test was negative.

Anyway, thank you for reading, my actual point is that today I've been told her release date is targeted Mon 19th and a social worker visited today with a view to returning her home with a care package.

I can't see how this would be safe or comfortable for her to have four 15 min visits a day when she is currently unable to even sit herself up in bed without help.

Has anyone who has been through this help with what to expect from this conversation please? Apparently the social working is going to call me. I can't believe they would just discharge her like this.

Do you know what she would want?

Sorry to hear this, she sounds very poorly indeed. Would a hospice be something that you would consider? I would say she would not be well enough to be without constant care. She needs her pain managed closely, a hospice would be well placed to offer this if available.. or maybe home with family care (if you can offer) and Macmillan nurses coming frequently for support?

She sounds too poorly to go home. She would need home oxygen set up. A Hospital style bed and palliative nurses. Is she under the palliative care team. How would she even get home. I would speak with the doctor and nurses first to ask what they say if she's safe to go home.

Don't let them send her home. Keep saying it's not safe. We had something similar, they just want them home ASAP and out of the beds

The only safe way they could discharge her is into a nursing home (note nursing, not care home).
If there is any mention at all of her going home and you being expected to help care for her, say you can't. That sounds brutal I know, but as you've said yourself she isn't well enough and it wouldn't be safe. Even if there is talk of a care package, unpick what that will look like and reiterate that it doing be safe.

That it won't be safe.

Definitely don’t agree to it as it isn’t going to be safe for your mum

Hi OP, try not to panic. Medical and social work entirely differently. So although the hospital may consider your mum fit for discharge, that's not to say the social worker will allow that to go ahead. They CANNOT discharge your mum if the necessary supports are not in place at home to keep her safe.
There's every chance the social worker wouldn't even suggest 4 x visits per day as it would be unsafe. However, have a think about how you'd feel about an admission to care as this is likely the only other alternative.
Don't allow them to discharge until a robust risk assessment has been done. And I would also suggest that you don't offer any 'support' as this could be taken advantage of and minimise formal input.

Sorry OP, just re-read and saw a SW had been to visit already. I'd insist on a risk assessment including:
Is there a community alert? Is your mother able to use this to summon help? Can she summon help in an emergency? How will she use the bathroom? How will she eat a meal / get a drink? Who will attend to personal care? Is she able to take medication? If she was in pain, how could she tell anyone/who would help? Is she a falls risk?
You know your mums abilities best so I'd hammer home the day to day stuff she will struggle with out with visits.

I don’t mean to be brutal, but if they can’t treat her, she is dying? Has there been a conversation about how long, and what she needs to be comfortable? I would have thought discharge to a nursing home was minimum in the circumstances and they should be looking at a hospice

Do they do CHC in Scotland? …get an assessment whilst she’s still in hospital

OP, I'm so sorry to hear how poorly your mum is and I know this will be a really stressful situation for you.

I'm also based in Scotland and my elderly grandpa is regularly in and out of hospital due to his medical condition.

Firstly, I agree with many other posters and as much as this is hard to do, do not say you can offer any assistance for example caring at home etc. If she were to go home she would need carers in place 4 times a day, and possibly even overnight carers, although I'm not sure the process/rules on overnight), possibly this requires payment ?.

It is extremely tough for them to get carers in place for 4 times a day so quickly and this is partly why so many people end up having to stay in hospital until the right measures are put in place to help them. My grandpa was held for a good period of time trying to put it all in place because there was such demand for carers in the community. Even at home, other assessments should be carried out by occupational health etc to see if anymore assistance is needed. Although the hospital plan for her to be discharged by the 19th, I wonder whether they would get all that support in place by then given the demand is so high?

Remind the hospital and the social work department of their duty of care to your mum when they call. I'm shocked that it appears so little support is in place given how ill your mother is. As others have said, she probably should not be discharged and I would definitely tell the hospital you will be complaining. As upsetting as this sounds, I agree with others that your mum sounds so unwell that home might not be the best place and perhaps a hospice may help her at this really difficult time ?

I know the NHS is overwhelmed and services in the community are in high demand, but your mum absolutely deserves the best possibly care and I would 100% argue your points to both the hospital and social work. Yes people can say there is a crisis with bed shortages, hence people being discharged so soon, but it is so devastating to see a woman with cancer getting discharged so unwell with so little support. Your mum absolutely deserves to be safe and comfortable. Whatever you think is the best thing for your mum, whether that be a hospice or other support system, definitely fight for what she needs and make as many complaints possible.

I would be asking that she be released to a hospice/palliative care facility if she is refusing food, etc. She’s clearly not in a state to return home atm.

Thank you for all your responses. So many it’s difficult to reply individually.

Mum has been unwell and frail for a long time, with many other conditions. It’s not the first fall or hospitalisation.

She is usually so positive and cheery, but this is too much for her.

I need to be prepared for this social worker assessment. If anyone has links to legislation or procedures they have to follow to keep her safe, that would be useful.

I have POA, but not enabled yet as there hasn’t been a reason to.

ideally I think there should be an assessment by all medical teams and me as her advocate.

I suppose I want to say why are you making this decision? Why is it the correct choice? Is there guidelines and legislation around this? Explain why/how this is best and safe for her.

also I want to scream and wish this was something else/different

It won't be a social workers decision to send her home, it will be a medical decision, you need to speak with the doctor or nurse. Who said she will go home with 4 x 15mins care? She needs a care assessment, home oxygen, equipment, district nurses, palliative care input, ambulance. Has the doctor said she can go home? I would ask to speak with the doctor and palliative care nurse before making any decisions. If she is delirious and confused you use your poa.

It looks like it's been a medical decision to discharge. I would ask all the questions you need answers to but if your not satisfied I would tell them straight that you will be making a formal complaint as you feel it's unsafe for her to be discharged. This way you will have it down in writing.

The hospital and social work department will all have a duty of care to your mum and their is legislation around that. Most solicitors websites will help explain it well by helping breaking it all down.

Regarding the POA, is this for medical purposes or finances, or a combination of both ? I would think what you want the best outcome for your mum to be, eg home with other medical equipment if it can be provided, additional care, nursing home, hospice etc, before social work give you a call. That way you can argue what you feel is the safest option and will give her the best possible care.

I would also say, it could be worth while giving your solicitor a call to see where you stand with the POA if it's for medical purposes and how everything operates.

Well there has been no further word from the social worker. Mum has been moved to a longer term ward. There’s no talk of her going anywhere at the moment.